One Boy`s War

April 21, 1993|By NANCY McVICAR, Staff Writer

He read everything he could find about his illness -- the latest studies from here and abroad, and managed to get some of the top researchers in the world on the phone, developing a rapport with many of them. What he learned he relayed to the others he had met who were not content to sit and wait for death.

When he learned of two unapproved antiviral drugs -- ribavirin and isoprinosine -- touted as effective in halting the virus, he persuaded a friend to go with him to Mexico. They smuggled the drugs out inside a pinata.

It was his first act of civil disobedience and his initiation into the fledgling AIDS underground.

He talked his way into the first government-sanctioned trial of AZT at UCLA medical school, even though he did not meet the criteria, and when he heard about other promising drugs, he selectively added them to his arsenal, too.

Five years after his diagnosis, he had been to the funerals of many of his friends and acquaintances, marched in numerous candelight vigils, but remained in comparatively good health.

Then he noticed his short-term memory was slipping. He feared the virus had attacked his brain. He quit his job and returned home to South Florida to be near his mother, an elementary school teacher at Larkdale Elementary in Fort Lauderdale.

Through his network of sources, he found Dr. Robert Mayer, a North Miami Beach pediatrician, who was willing not only to monitor his use of experimental drugs but to provide other help.

Mayer had been using ozone therapy in various forms since the 1950s and was treating some AIDS patients each week by removing a pint of their blood, exposing it to ozone with the aim of killing the virus contained in it, then reinfusing it into the same patient.

Sergios went to work for Mayer, organizing his office and continuing to gather research information on the newest drugs in the AIDS pipeline. In exchange, he got a small salary, weekly ozone treatments, and the company of many other South Floridians looking for effective alternatives to AZT.

If an experimental drug sounded especially promising, Sergios usually was able to obtain it either through foreign suppliers or through the underground labs he knew to be reliable. He kept meticulous records on the drugs` effect on patients in the practice.

One of the most promising was trichosanthin, nicknamed Compound Q, derived from a Chinese cucumber plant. An AIDS researcher in California discovered the drug could kill HIV in the test tube without harming healthy cells, even wiping it out where it lurked in macrophages, a type of white blood cell that can act as a reservoir of virus in the bloodstream.

Sergios learned the drug would soon go into government-sanctioned trials on a handful of patients but that it would be at least two years before results would be known. He decided to speed things along.

He obtained the drug by calling a gynecologist in China, where it is used for abortions and as a cancer treatment, and mailing her a check for $400.

A four-city underground controlled trial of the drug, planned as though the FDA were monitoring the study, recruited willing participants.

Sergios, Mayer and the other underground investigators followed a strict protocol. They wanted to be able to present their evidence at the end of the trial and have it accepted by the medical establishment.

But when one of the participants in San Francisco died, the underground study was attacked by mainstream researchers as dangerous and there were attempts to shut it down.

Citing safety concerns, the FDA banned the importation of trichosanthin on Aug. 4, 1989, but by that time large amounts of the drug were already in the United States and the first phase of the underground study had been concluded.

The ``official`` trial of the drug had just enrolled its 12th patient by that time.

In an unprecedented move, the FDA met with the underground researchers and heard their evidence. What their study showed was that Compound Q is not the magic bullet that will wipe out AIDS. Some patients did show improvement, but the results overall were disappointing.

The drug is still being tested in a government-sanctioned trial.

As his condition declined, Sergios had to leave Mayer`s practice to protect himself from potential infections from other sick patients.

But he was heartened that the underground was thriving under the leadership of Lenny Kaplan and his Fort Lauderdale Fight for Life group, along with its drug buyers club, PWA Health Alliance.

Sergios turned his attention toward researchers attempting to find a way to rebuild the immune systems of patients with the virus, and to writing his book.

``This book is not intended to be an indictment of the mainstream medical system,`` he writes in the preface. ``In my experience, the system has worked many more times than it has failed. But it does raise a major issue that still exists: how to get promising drugs quickly into the hands of people with life- threatening illnesses, while at the same time completing formal and rigorous investigations of those compounds.``

It has been 10 years since his diagnosis, and Sergios is still with us. He has not been well enough, however, to take on the publicity tour his book publisher wanted.